The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Heartfelt thanks to Alison, our departing Head of Research

Research

10 May 2024

This month, The Lily Foundation bids a sad farewell to one of our long-term team members and supporters, Alison Maguire. Founder and CEO Liz Curtis pays tribute to the hard work, dedication and passion Alison has shown over the last 12 years, and the legacy she leaves in mitochondrial disease research.

A lady holds her young daughter who has mito, standing beneath a blossom tree

“In February 2009, I received an email from Alison, who had just lost her four-year-old daughter, Niamh, to mitochondrial disease. Niamh had received her mito diagnosis only months before she lost her battle, and at the time Alison was told there was no charity dedicated to supporting those affected by the disease.

However, whilst taking her son to a local soft play area, Alison spotted some pink leaflets covered in butterflies. Niamh had always had a fascination with butterflies, so Alison picked one up. To her surprise, the leaflet was advertising the services of a charity that not only supported those affected by mitochondrial disease but were funding research into the condition. And the biggest surprise of all? It was based just around the corner from her home in Warlingham!

The loss of Niamh inevitably changed Alison’s life, and her career direction too. Just over a year later she joined our Board of Trustees to help steer the strategy and direction of the charity before deciding two years later, in 2012, to come on board the Lily team as Head of Research.

With her biomedical degree and lived experience of mito, Alison was excellently placed to transform the research arm of The Lily Foundation. I can say with no hesitation that her hard work, passion and dedication over 12 incredible years has been pivotal to the growth of our charity, which is rightly now recognised as a key player in mitochondrial disease research on a global platform.

A new direction

Alison has decided to leave The Lily Foundation and take a new career path, which I know has been an extremely hard decision for her to reach. We will all miss her greatly, and on behalf of our charity and everyone in the mito community, I would like to say a huge thank you to Alison for everything she has accomplished; achievements that have been instrumental to the success of our charity.

We are proud to have become the largest charitable funder of mitochondrial disease research in Europe, and we are unwavering in our fight against the disease. We will continue to lead in this area through the strong relationships we’ve developed with medical professionals as well as, increasingly, pharmaceutical companies.

Alison will be handing over the reins to Katie Waller, our Patient Engagement & Advocacy Manager, and Research Manager Maria O’Hanlon, who will continue to drive The Lily Foundation forward. We will carry on collaborating and sharing knowledge, raising awareness of this inherited condition, and providing hope and support for all the patients and families affected. Because The Lily Foundation remains fully committed to our long-term goal of finding effective treatments and, ultimately, a cure for mitochondrial disease.

Alison, we wish you all the very best for your future. We may be losing a team member, but you will always remain a friend, a supporter and a member of the Lily family. We know you’ll be watching on from the sidelines, cheering our progress as we work towards that cure.”